Member Article

Youngster battling rare Stargardt’s disease officially opens new optical store in Cheshunt

A ten-year-old battling a rare progressive eye condition has officially opened the doors, of new ‘Vision Express at Tesco’ store in Cheshunt.

Ethan Tailor, who is losing his sight to Stargardt’s disease, joined mum Bhavna, dad Umesh and sister Elise to help cut the ribbon at the new store, which is home to sophisticated sight screening equipment, delivering a thorough eye health service to local residents.

Ethan was diagnosed with Stargardt’s when he was just seven years old. “We noticed some issues with Ethan’s sight, so we took him to our local Vision Express store in Cheshunt. Ethan was advised to urgently visit Moorfields Eye Hospital, where he was diagnosed as having Stargardt’s disease.” explained Bhavna.

Referred urgently, Ethan was recommended to wear sunglasses to protect his eyes from UV light, which is believed to speed up the progressive disease. As the disease is a rare progressive inherited retinal condition, effecting 1 in 10,000, there aren’t many support systems in place.“ said Bhavna. “Since Ethan’s diagnosis, I have developed a website, which acts as a one-stop-shop for information and support for people with Stargardt’s and their families. We are working on setting up a charity called ‘Stargardt’s Connected’ that aims to raise awareness, give support and seek a cure.”

“We’ve recently set up trustees for the charity and a charity account, meaning we’ve been able to start fundraising where the money raised will go towards supporting the Stargardt’s community. Informal networking events, such as a picnic, have been very successful and we’re hoping to host an art and craft event in March.

“We’ve found that most people battling Stargardt’s are isolated and have never met anyone else with the condition. The networking events are giving people a chance to meet up with others battling the condition to offer support and advice. It’s great to see adults being positive role models for children with the disease. We would love to improve understanding of the condition with opticians, as this is the first port of call for people concerned about their eye health. Stargardt’s symptoms are very similar to macular disease and a better understanding could help opticians to spot the condition in the early stages.”

Ethan’s eyesight has deteriorated since his diagnosis as he can no longer read normal print books and struggles to recognize his friends in the playground. Despite this, Bhavna describes Ethan as a happy boy and who is passionate for life. As a family they are embarking on a fulfilling ‘bucket list’ to give Ethan valuable visual memories to cherish before his sight deteriorates further. She added: “Ethan was excited to be a part of the store opening and saw it as a great opportunity to continue to raise awareness of the condition.”

Vision Express at Tesco Cheshunt store manager, Sharon Kenny said: “It’s been lovely having Ethan and his family in store to join us with the launch celebrations and hear about how as eye health professionals we can best support people affected by Stargardt’s.

“We’re one of the largest Vision Express at Tesco stores and we’re very proud of our new home. We’re really looking forward to welcoming customers through our doors and encouraging the local community to have regular eye tests.”

Vision Express’ acquired Tesco Opticians at the end of 2017 and the Cheshunt optical store is one of more than 200 ‘Vision Express at Tesco’ outlets launching across the UK in 2018 and showcases a purple-infused rebrand being introduced across the entire Vision Express chain.

The re-brand introduces a refreshed logo and striking purple and green colour decor, featuring bright sofas and wooden flooring, delivering a modern, inviting and vibrant environment to encourage customers to feel at ease.

This was posted in Bdaily's Members' News section by Vision Express .